Long-QT Syndrome Blog

Patients' Views Of A Rare Heart Disease

Saturday, September 06, 2008

New Defibrillator Study Is Raising Worries

A new study published in the September 2008 issue of the New England Journal of Medicine (NEJM)* indicates that that people who receive shocks from implanted defibrillators (ICD) are more likely to die later on. News agencies and newspapers around the world reported on these findings, which caused some unease among the long-QT syndrome community on the internet.

I read the study's abstract. I understand the results are referring to patients with heart failure only and not to people who are suffering from sudden arrhythmia death syndromes, but have a healthy heart otherwise.

Ironically, the September 2008 issue of the NEJM published another study** saying that in patients "with moderately symptomatic heart failure, single-lead ICD therapy was not associated with any detectable adverse quality-of-life effects during 30 months of follow-up".

But in the end, we should not fool ourselves: One does not have a small cable inserted into one's heart through an artery and think it does not affect one's body in one way or another.

* Prognostic Importance of Defibrillator Shocks in Patients with Heart Failure** Quality of Life with Defibrillator Therapy or Amiodarone in Heart Failure

Wednesday, August 20, 2008

Long-QT Syndrome At Work

I got an interesting e-mail from a construction site manager today. She hired a young worker suffering from long-QT syndrome and asked for advice. Not only did the construction firm provide an automated external defibrillator (AED), but the manager also took a first aid course.

I call that commendable and hope more companies follow that example.

Of course, it is also up to long-QT syndrome patients to make sure they have proper treatment and are followed by a specialist.

Since I have a defibrillator implanted, AEDs at my home or at my workplace are less an issue. My bosses and colleagues are informed about my disease though and know I have an ICD.

They support me in every way and understand that there are some consequences. For instance, I have my follow-ups on a Thursday afternoon every sixth month. This means I have to leave work earlier.

Wednesday, August 06, 2008

Update: Set, Game and Match

My tennis game went very well. We played doubles, so the pace was not as high as I expected. I used to play badminton doubles and in my memory, the rhythm was higher.

Since I am right handed and my defibrillator is implanted on the left side, I did not feel constrained. But after a while of playing, I started feeling the defibrillator. I think it has to do with the action of throwing the ball in the air in order to serve.

Sunday, July 27, 2008

Set, Game and Match

One of my colleagues at work invited me to play tennis with him.

I am a bit hesitant because of my defibrillator (ICD) and because tennis is a stop and go sport. Detection in my device is set at 200 beats per minute (bpm), meaning: Should my heart rate reach 200 bpm, my ICD will deliver a shock. Usually, the range is between 170 to 220 bpm depending on the patient's medical history and lifestyle.

Now my cardiologist thinks it is almost impossible to reach 200 bpm because I am taking Beta blockers.

Sunday, July 20, 2008

ICD vs. iPhone

Apple officially launched the iPhone in Switzerland this month. It is sold out already here, so Swiss fans have to wait up to two weeks to get their devices. I do not. Because I am a business journalist covering telecommunications, I got a test iPhone for one month.I thought it could be fun to compare a cult product such as the iPhone with another hightech device, my implantable cardioverter defibrillator (ICD):Weight: 75g (ICD); 133g (iPhone)Battery life: 5 to 7 years (ICD); 5 hours 33 minutes (iPhone)

Monday, July 14, 2008

LQT3 Less Aggressive Than Thought?

My family and I are participating in an international study about the LQT3 type of long-QT syndrome. Until now, LQT3 is considered to be the most lethal form and the less treatable with Beta blockers. Usually, people with LQT3 are advised to have a defibrillator implanted, even when they show no symptoms.Recently, I was talking to one of the authors of the study. The first results now indicate that LQT3 is less aggressive than thought.I am very glad this clinical study is being made. I alyways had the impression LQT3 was treated as an orphan by science. I hope the final results will help to tailor therapy even better.